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What is Loeys-Dietz syndrome?

Loeys-Dietz syndrome (LDS) is a genetic disorder that affects the connective tissue in the body. The disorder was first observed and described by Dr. Bart Loeys and Dr. Hal Dietz at the Johns Hopkins University School of Medicine in 2005. Since then, other groups around the world have described additional genetic causes of Loeys-Dietz syndrome.

Individuals with LDS exhibit a variety of medical features in the cardiovascular, musculoskeletal, skin and gastrointestinal systems. Information about the natural history and management of individuals with LDS continues to evolve.

LDS manifests itself in a number of ways; therefore, no two persons with LDS will have identical medical characteristics. It is recommended that you consult your physician or a local geneticist if you have questions about individual health concerns.

Our Mission

The Loeys-Dietz Syndrome Foundation (LDSF) is dedicated to:

encouraging education about Loeys-Dietz syndrome and related connective tissue disorders to medical professionals and lay communities in order to aid in identification, diagnosis, and treatment of Loeys-Dietz syndrome

fostering research about Loeys-Dietz syndrome

providing a support network for individuals, parents, and families affected by Loeys-Dietz syndrome

Strong City Baltimore (EIN # 52-0897806) is pleased to serve as the Fiscal Sponsor for Loeys-Dietz Syndrome Foundation. Through this fiscal sponsorship relationship, LDSF is able to receive tax-deductible contributions, including in-kind, grant awards, and financial contributions in support of its work.

Our Purpose

Our purpose is to provide information about what Loeys-Dietz syndrome (LDS) is and to provide hope for those impacted by the condition. We hope that through our website, newsletter, social media outlets and other resources, you will find medical information and personal support to assist you and your family on your journey with LDS.

We strive to serve a growing global community of individuals impacted by LDS.

For more information about our international partners and affiliate organizations, please visit our Partners & Affiliatespage.